BRCAnomics: Don’t Buy into Cancer Consumerism

Ah, the shower shirt ($78 + shipping), a garbage bag for showering after mastectomy. I remember seeing these kind of things when I was planning my surgery and wondering if I needed them. I was terrified and tried to micromanage the entire situation. I was ready to empty my bank account to make the experience even a smidgen less awful.

To all the scared women facing mastectomy and wondering if you need a shower shirt, I get it. I’ve been there. Now, I’m here on the other side of mastectomy to tell you that you do not need this shit.

You don’t need axillapillas ($20 + shipping each), for under your arms–regular pillows work just fine. You don’t need pink pockets ($19.99 + shipping) to hold your drains–pinning them to your mastectomy bra works just fine. You don’t need the brobe ($89.99 + shipping) to carry drains and cover up–regular pajamas and bathrobes work just fine.

Most of these products, and a zillion others, are made by companies founded by well-intentioned women who’ve had mastectomies. They’ve been through it themselves and wish there was a better way. I wish there was a better way too. Surgery sucks. It’s painful. It’s expensive. It’s inconvenient. But buying unnecessary, overpriced products that you’ll use once or twice is not going to make the situation any better or make you more comfortable. It’s just going to make you poorer and leave you with a bunch of useless stuff once you’ve recovered.

Well intentioned or not, these products sell by preying on the fears of vulnerable women facing surgery. It’s capitalism, baby: there’s lots of money to be made off of BRCA+ women and women with cancer. Cancer consumerism–you don’t need it.

 

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You are not required to be pretty

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[This meme shows up on my Facebook newsfeed periodically. It’s easy to see why. Although it is attributed to Diana Vreeland, the quote originates from Erin McKean’s blog A Dress a Day. You can read her wonderful post here.]

Jessica Queller’s Pretty is What Changes (2008) takes its title from Stephen Sondheim’s song “Sunday in the Park with George.” Queller uses the relevant verse as an epigraph to her memoir: “Pretty isn’t beautiful, Mother/ Pretty is what changes/ What the eye arranges/ Is what is beautiful.” A lovely sentiment–that beauty is in the eye of the beholder, as Queller explains in this NPR segment–especially given the way Queller details her fashion designer mother’s troubling obsession with beauty.

Given this critique of beauty standards and Queller’s attempts to position herself as the nerdy ugly duckling in a family populated by glamorous women, it’s surprising that Queller talks about putting on makeup before her prophylactic bilateral mastectomy and placement of expanders for reconstruction: “I had put on a little blush and lipstick that morning while dressing for the hospital. I was, after all, my mother’s daughter” (201). Before Queller’s surgery, her sister Danielle tells her that a young male doctor is being flirtatious and Queller exclaims “Thank goodness I put on blush this morning!” (201). When she wakes up after the procedure, Danielle says “You’re the only person who could come out of five hours of surgery with her blush and lipstick looking fresh and rosy!” (202).

Before her exchange surgery, Queller says that she feels tired, so “I certainly hadn’t bothered with makeup” (208). However, as she’s waiting in pre-op before the surgery, the same attractive doctor appears to say hello and mentions that he’ll check in on her during recovery.

“Dr. Kutchin left, and Dani and I turned into giggling, frazzled eighth graders.

‘Did you bring my makeup? I need some blush!’ I cried.

‘Yes–it’s in the bag. He likes you!’

‘I look like hell–he said he was going to visit in recovery!”

‘Don’t worry.’ Dani took out a makeup brush and dusted my cheeks until they were rosy. ‘All better.’ (208).

So much for following through on the promises of the book’s title and epigraph. It’s disheartening that these scenes come towards the end of the memoir, when Queller has already detailed the many problems with her mother’s obsession with beauty. In the end, her book shows that BRCA+ women can stay pretty despite the physical and psychological stresses of grueling risk-reducing surgeries. Maintaining dominant white beauty standards is as easy as blush and lipstick.

This obsession with maintaining prettiness during mastectomy isn’t limited to the BRCA+ community, of course. It also pops up in Marisa Acocella Marchetto’s comic Cancer Vixen (2006), a book with so many ideological problems that I’m going to restrain myself and just mention her constant evocation of MAC cosmetics.

And of course, there’s Geralyn Lucas’s Why I Wore Lipstick to My Mastectomy. I heard Lucas speak at the Joining FORCEs conference last summer and she made it seem as though wearing red lipstick into her surgery was a performance of the kind of person she wanted to be throughout her experiences with breast cancer: bold, confident, strong, feminine. The book actually treats lipstick in a far more complicated manner than this and I don’t have time to deal with it fully here. Suffice it to say that somestimes she depicts applying lipstick as a confident act and sometimes it seems more like an act of desperation. Still, Lucas not only wore lipstick into surgery, but also named her memoir after this gesture.

Encountering the makeup trope repeatedly in supposedly empowering breast cancer and BRCA+ memoirs, all I can think is “For fuck’s sake, am I the only one who read The Beauty Myth?”

When I told someone I was going to write a blog post on wearing makeup into surgery, he said “Why bother? It’s obviously stupid. It’s not worth your time.” In some ways, he’s right: wearing makeup into surgery is clearly a bad idea–just ask your surgeon. But I think the problem of pretty goes far beyond Queller, Marchetto, and Lucas. It’s symptomatic of larger trends in breast cancer and BRCA+ discourses, which are still dominated by a certain kind of white middle-class femininity. Such conventional beauty standards are especially on display this time of year, as we enter the annual pink orgy that is Breast Cancer Awareness Month (a “month” that now stretches its tentacles into September and November).

To be clear, I’m not talking about body image issues surrounding mastectomy, chemotherapy, radiation, and/or reconstruction here. I’m talking specifically about beauty standards, the pressure to return to “normal” femininity and behavior as quickly as possible (or preemptively in some cases), and the ways in which conventional femininity is repeatedly presented as a form of empowerment to women grappling with major health issues like BRCA mutations and cancer.

The idea that women can and should be pretty while undergoing mastectomy has a long institutional history in Reach for Recovery programs in the mid-twentieth century. Such programs helped women return to conventional gender roles as quickly as possible. They were given prostheses, wigs, and make up, and taught how to use them despite limited range of movement after disfiguring Halsted mastectomies.

Reach for Recovery not only helped women look their best more quickly, but also helped women hide the fact that they were undergoing treatment for breast cancer at all. To put it in Maren Klawiter’s terms, such programs upheld the “architecture of the breast cancer closet.” It’s a familiar sentiment to anyone who has paid any attention to Bright Pink’s annual corporate-sponsored tribute to heteronormative white middle-class beauty standards, Fabfest.

So for the record: you are not required to be pretty, ever, but you are especially not required to be pretty before, during, or after fucking surgery. Wearing makeup into surgery isn’t empowerment. It’s a displacement at best, pure patriarchy at worst.

Oophorectomy Sucks

I get it: risk-reducing bilateral salpingo-oophorectomy (RRBSO) is the only proven way to protect high risk women from ovarian cancer, a disease that is particularly hard to detect, psychologically and physically devastating, and usually deadly. There are currently no accurate ways to screen for it in symptomless women and by the time symptoms do arise the cancer has almost always already spread beyond the pelvis and it is too late to save the patient’s life. Moreover, the only way to make a diagnosis for ovarian cancer in women with symptoms is surgery, which is at best unpleasant (as I can attest) and at worse can lead to life-threatening complications (as a friend of mine who nearly died during her seemingly routine RRBSO can attest). RRBSO is the only scientifically proven way to prevent ovarian cancer and, as a bonus, also reduces the risk of breast cancer. It’s absolutely clear that oophorectomy saves women’s lives.

HOWEVER.

Oophorectomy brings its own horrors. Surgical menopause is no joke. A recent UPenn study found that the vast majority of women who undergo RRBSO experience some form of “sexual dysfunction, menopausal symptoms, cognitive and stress issues, and poor sleep” after surgery. I couldn’t help but roll my eyes when I saw this study: after all, thousands upon thousands of women in the BRCA+ community have been griping about surgical menopause for decades. Did we really need a study to tell us premature menopause is bad? Apparently so, if we want doctors and researchers to take us whiny hysterical ladyfolk seriously.

Despite the fact that oophorectomy is a surgery with serious repercussions, BRCA+ women are pressured (by other BRCA+ women, by doctors, by researchers, by genetic counselors, etc.) to undergo RRBSO after child-bearing is completed and by the age of 35. The pressure to get an oophorectomy by 35 is even more intense than the pressure to have a mastectomy, since removal of the ovaries also reduces the risk of developing breast cancer. From my (very, very pre-menopausal) perspective, oophorectomy is a far more radical surgery than mastectomy, as difficult as that procedure undoubtedly is, because removing the ovaries throws women into instantaneous surgical menopause. The ovaries continue to help regulate hormonal function in women even after natural menopause and oophorectomy has a range of often unpredictable side effects and not well-studied medical repercussions.

When women do not live by the commandment to remove their ovaries by 35, they are often explicitly or implicitly blamed for their own cancers. Take this otherwise sympathetic article entitled “Cancer sufferer Elisha Neave, who chose to delay preventative surgery dies aged 36.” The headline suggests that if only Elisha had followed HBOC recommendations and removed her ovaries by 35, then she would be alive today. After Elisha passed away, many BRCA+ women responded to this particular headline by expressing empathy for her and her family, but also by asserting the importance of early oophorectomy for high risk women. As I’ve written before, there’s a huge flaw in this logic: Elisha’s choice to delay oophorectomy was well within the guidelines for BRCA+ women. Her ovarian cancer struck unusually early, even for a BRCA+ cancer, and official guidelines cannot account for cases like hers. In other words, the oophorectomy by 35 commandment wouldn’t have saved her. (Incidentally, it’s funny/infuriating how BRCA+ women are censured by the general public and mass media for both choosing and not choosing to have prophylactic surgery. We just can’t win.)

The often repeated deadline to have an oophorectomy by 35 is misleading, for a variety of reasons. For starters, BRCA1 and BRCA2 mutations carry significantly different risks for ovarian cancer, which require somewhat different surgical management. What’s more, ovarian cancer in BRCA1 and BRCA2 women tend to develop at different points in their lives. BRCA1 women are more likely get ovarian cancer after the age of 40, while BRCA2 women are more likely to get it after the age of 50. Again, this means that BRCA1 and BRCA2 require different surgical management strategies. Few things bother me more in the BRCA+ community than hearing “oophorectomy by 35” get bandied about as a set-in-stone commandment when in fact the timing of oophorectomy might differ significantly according to which genetic mutation you have.

Speaking of commandments, who gave us this one? At the Joining FORCEs conference a few weeks ago, Dr. Noah Kauff noted that the “oophorectomy by 35” deadline actually originated in a misreading of his own research. In his study, he and his co-researchers observed that RRBSO after 35 is reasonable for BRCA+ women. Somewhere in the telephone game of media reportage and social media that recommendation got turned into a hard and fast rule, but it’s not. To my surprise, Dr. Kauff said that because BRCA2 women are less likely to develop ovarian cancer than BRCA1 women and that when they do it usually emerges after the age of 50, he doesn’t even recommend screening BRCA2 women for ovarian cancer until the age of 40 and may even counsel a BRCA2 patient to delay oophorectomy until her early-to-mid-40s (depending on the patient, of course).

What was so refreshing about Dr. Kauff’s presentation is his acknowledgement that BRCA+ women should have individualized prevention plans based upon their particular situations, family histories, and mutations. This was not the sort of attitude I saw among many male doctors at the Joining FORCEs conference, most of whom were clearly on TEAM OOPH. For instance, during his presentation on testing for founders mutations abroad, Dr. Steven Narod commented that “The benchmark for success is the number of oophoretomies performed on healthy women.” His reasoning is that oophorectomies are the only proven way to prevent ovarian cancer in high risk women. He’s not wrong, but the issue is far more complicated than a unilateral approach suggests.

And yes, TEAM OOPH is a boys’ club. Women doctors and researchers are far more likely to acknowledge that surgical menopause comes with an array of negative psychological, cognitive, and other effects, some of which are temporary and simply unpleasant and others that may be chronic and serious (at the same conference, Dr. Karen Hurley remarked that BRCA+ women face an “avalanche” of imperfect choices–truer words have never been said).

History tells us that patriarchal medicine has long removed female organs with little regard for women’s desires, agency, and quality of life. The prevalence of unnecessary hysterectomies even today is just one example of the ways in which this cavalier attitude towards women’s bodies continues in modern medicine. The truth is that the female reproductive track has not been well studied and there’s a lot that remains a mystery about such quotidian biological processes as menstruation and hormonal cycles. Considering this context, it’s little surprise that ovarian cancer in particular is poorly understood. The solution to such widespread ignorance about female organs should not be removal. It should be more research.

But research takes time and although important work is currently underway, it won’t be done in time for many BRCA+ women who need to decide how to lower their risk of ovarian cancer. For now, oophorectomy will remain an important option for risk reduction for BRCA+ women.

While we wait, the BRCA+ community–patients, doctors, researchers, genetic counselors, groupies, etc.–need to make some attitudinal changes.

  • We need to keep in mind at all times that BRCA1 and BRCA2 are very similar but not identical.
  • We must demand prevention management strategies that take into account these differences.
  • We need to demand more research on the risks associated with particular mutations within BRCA1 and BRCA2.
  • We need to demand personalized risk estimates based on our individual mutations, family histories, situations, and values.
  • We need to acknowledge that ovarian function is important for a woman’s psychological and physical health even after her childbearing years and even a woman who does not want to have (more or any) children may have valid reasons for ovary conservation.
  • We need to demand surgical alternatives to oophorectomy.
  • We need to demand alternatives to surgical risk reduction altogether.
  • We need to demand better ways to manage surgical menopause.
  • We need to remember that surgery is just one strategy for risk reduction and not a mandate, and that there are good reasons for choosing surveillance or chemoprevention.
  • We need to stop implicitly blaming women for not doing “enough” to prevent their own cancers, whether that be not exercising more or delaying oophorectomy.
  • We need to acknowledge that quality of life is incredibly important.
  • We need to understand that not all doctors agree about timing oophorectomy and we need to familiarize ourselves with these medical debates.
  • We need to reject one-size-fits-all approaches to risk reduction and need to make well-informed, medically sound decisions for ourselves.
  • We need to stop being so matter-of-fact about tearing out healthy ovaries and sending women into surgical menopause. It is, at best, the lesser of two evils.

 

Hallelujah: the best recovery dress ever

Behold, for I bring you tidings of great joy: the perfect summer surgery recovery clothes.

I have been searching high and low for comfortable non-ridiculous clothes to wear while recovering from my mastectomy. This is harder than you might think. I want items that are cheap (because I won’t be wearing them much beyond my initial recovery), logistically easy (easy to get on and off while in a painkiller haze when I can’t lift my arms), not ridiculous (in other words, that I can wear in public without fearing that people are pointing and laughing behind my back), and above all comfortable (no small feat in the sticky summer heat).

I’ve been scoping out fast fashion retailers–Forever 21, H&M, Old Navy, etc.–and have been coming up largely empty. It seems like everything comfortable-looking, like the recent t-shirt dress trend, requires that I be able to lift my arms, which I won’t be able to do after mastectomy. And a lot of cotton summer clothes seem to come in just acid orange or electric yellow. Seriously, when is this horrific neon trend going to die? All this has made me envious of women who have their risk reducing surgeries in winter when they can hide under zip up hoodies and button up flannel shirts.

I recently had exploratory surgery to look for ovarian cancer. Fortunately I have been given a clean bill of health. [pause for happy dance] Recovering from laparoscopic surgery has been much harder than most people made it out to be, and it’s given me a little taste of what I’m in for with the mastectomy surgery in a few months. The week before my surgery I bought this dress and stashed it away for the mastectomy: the Merona maxi tank dress at Target.

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It’s kind of ridiculous how excited I am by this dress, but after searching for appropriate recovery gear for the last few months I am so happy to have found it. The neck is wide enough that I can step into the dress and pull it on. It’s nice and airy even on the sweatiest days. It’s long, so everything stays covered. It’s loose enough that it doesn’t bother my incisions. It’s forgiving and totally comfortable. It’s not utterly hideous and comes in several basic shades, so I can wear it on walks around the neighborhood or runs to the grocery story without being self conscious.

I know it doesn’t look all that special, but it is the perfect thing to wear when you want to feel half-way human even though you’re too doped up on pain pills to wash your hair. Go buy it: it is glorious.

 

 

Joanna Rudnick’s In the Family

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I finally watched Joanna Rudnick’s documentary about being BRCA+, In the Family (2008). It is, obviously, required viewing for anyone with a BRCA mutation, but it’s hard to watch. I started to cry while the title credits began tracing out the cancers in Rudnick’s family and I didn’t stop until I had watched every bonus feature on the DVD.

The film begins with Rudnick’s horror at the idea of prophylactic surgery. She’s young and single; she wants to keep her breasts and ovaries until she can marry and have kids. As she begins to interview women with breast cancer, families with BRCA mutations, doctors, scientists, and various BRCA advocates, she seems to slowly realize that she ought to have a prophylactic mastectomy and oopherectomy. Still, as the film ends, she drags her feet.

I wanted to know what happened to Rudnick in the five years after the film’s premiere in 2008. After some quick googling, I found that she found a supportive partner, married, and had two daughters. Watching her film, it became clear to me what an important voice she is for the BRCA+ community. In it, Mary-Claire King tells two young women that they each have a BRCA mutation and she repeats several times that everything is going to be okay, that these women will not get breast cancer. Rudnick’s happiness–her supportive partner and chubby cheeked girls–gives me hope that King is indeed correct: that BRCA+ women are not doomed to repeat their foremothers’ experiences. Rudnick, it seems, has beaten the odds and so can we.

So I was disheartened to find that Rudnick was recently diagnosed with breast cancer at the age of 39. On a post over at the PBS blog, she writes: “The worst part about being diagnosed with breast cancer is knowing that I had the knowledge to prevent it.” After treatment, she had a double mastectomy. As she was recovering, Angelina Jolie’s NYT article was published.

In the Family captures the horrors of preventative surgery, but also provides strong arguments for the necessity of it. Rudnick interviews women with breast cancer who swear that if they could go back in time to have the prophylactic mastectomies and oopherectomies that they would in a heartbeat. But Rudnick herself is evidence that hindsight is 20/20: surgery provides the best protection for BRCA+ women, but many women don’t want to do it or can’t bring themselves to pull the trigger. And who can blame them?

I hope Rudnick is doing well. In making her film and speaking out about her experiences, she has done an incredible service for other BRCA+ women. She has sacrificed her own privacy to provide us with a glimpse into the everyday life of a BRCA mutation carrier. I am grateful to her.